My 2 yo has a rapidly involuting congenital hemangioma (rich). After steroid therapy, 6 laser treatments, and an MRI. The rich diagnosis has been confirmed and my only treatment option ( which is experimental with a rich) is propranolol as the laser has been uneffective. This is my first time on this website . Iam feeling a bit defeated. My son has been through a lot in the last 2 years ( as I am sure many of you champion parents can relate) and I am looking for some support / reassurance that starting him on this drug is the right thing to do.
Has anyone had luck with the drug?

missy

08-29-2011 11:59 AM

Hi and welcome!

Almost everyone that I've heard about that used propanolol has had some measure of success, but I'm not sure I've heard of it being used with RICH. However, that just means that I didn't hear about it, not that it didn't happen.

When does he start it? We'll be looking for an update.

Missy

spaatz1329

08-29-2011 08:13 PM

It has worked wonders for us. My daughter has a large perineal hemangioma (PELVIS sydrome) and the derm is very pleased with the results so far.

Sluna21

08-29-2011 09:05 PM

Thank you for your replies. I have not started the drug. I actually ask my Derm to give some time to think about it. I have a very active 2 year old who like most two year olds has a hard time taking direction. Before we start the treatment he has to do an eccocardiogram and an ekg. In order to get accurate results he would have to do the tests, once again, under sedation. Im also worried about taking his blood pressure. He hates having it taken, and always starts crying which gives inaccurate results. I was considering waiting until he is at least old enough to understand to ensure compliance and decrease his anxiety. It seems as though most of the kids on the drug are infants. Does anyone have a toddler on it?

missy

08-30-2011 12:15 PM

I wonder if your doc would go for monitoring the blood pressure at home? We have one of those cuffs from Walgreens and it is surprisingly accurate. It might be easier on him if you can use one of those. Perhaps make a game of it and it won't be so stressful to him.

There are a couple of parents around here who have toddlers on propanolol and they will post soon, I'm sure.

Missy

Bec

09-01-2011 03:36 AM

Hi, my first post: I work with a charity that funds research into Vascular Malformations. We've recently published a paper on treatment of hemangiomas using propranonol... hope this is of interest.